Posts: 13

Topic: chemo has started

My MIL has started chemo, she just finished her first 2 weeks of Gem/Cis. So far no side effects. She is also going to have a port placed. Good news, the surgery team at U of Iowa is going to relook at her case after a couple of rounds of chemo, and if her MRI and numbers are good, may consider her for a liver transplant.

My question is this, why would one doc say she needed a whipple and liver transplant and now there is no talk of a whipple.

Re: chemo has started

rosegrace.....Not many places perform liver transplantation for patients with this disease. The exclusion criteria is quite extensive: Spread of cancer (metastases) to the liver, lymph nodes, or any other part of the body Cholangiocarcinoma in an area of the bile duct inside the liver or below the cystic duct Prior attempt at removal by surgery (this increases the chance the tumor may spread if it is not completely removed) Tumors that are >3cm in diameter when measured on CT or MRI Previous treatment with chemotherapy or radiation therapy Prior needle biopsy, either through the skin or by endoscopy, of the main tumor (this increases the risk for spread of the tumor outside of the bile duct). Lymph nodes surrounding the bile duct may be biopsied to ensure the tumor has not spread. Uncontrolled infection Additionally, some physicians believe that a resection is safer than a transplant due to the repressed immune system caused by anti-rejection medications. The above is the University of Michigan liver transplant protocol - not sure how it differs from the current Mayo protocol.Others may enlighten us with some of their thoughts.

Re: chemo has started

I hope that your MIL's chemo goes well for her Rose and remember to keep us posted on how everything goes for her. And great to hear as well that her team at Iowa are going to look at her again re possible surgery after some chemo. Fingers are crossed for some great news here!

That's a pretty hefty exclusion list isn't it Marion! But at least you guys in the US have the possiblility of transplant for CC as a treatment option. Here in the UK it is not done at all for CC and as far as I know it is not even up for consideration yet. I know that a small team from King's in London I think it was were over at Mayo lately observing the Mayo team and protocol at work but who knows what if anything will come from that. And I recall someone from Dublin telling me that they had a transplant as well but not sure about the rest of Europe.

Hugs to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: chemo has started

Marion,I am wondering if some of the exclusions have changed. I was originally told by Mayo clinic that they do not do transplants for ICC but look at Tiffany. Do you think more hospitals are looking at this as a treatment for CC?Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: chemo has started

Lisa....When I spoke with Dr. Javle (last year at ASCO) he mentioned liver transplantations for intrahepatic CC patients. I in turn told him that Medicare in Texas will cover only extrahepatic patients and, as we know, Medicare pretty much sets the standard for Insurance reimbursement. My concern was the shortages of liver donations and the high demand for such a transplant- he felt it was possible to do with liver from older patients, but we did not talk about a liver transplant such as the one Tiff is to receive. The criteria for Tiff's acceptance then must vary from the original Mayo protocol because; as far as I know, the Mayo protocol does not include intrahepatic CC patients. I will try to bring back some information when speaking with some of the specialists while attending ASCO this year. Also I am curious to see as to what the exclusion criteria entails?Will try to find out. If anyone else has some answers please, share with us.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: chemo has started

Thanks of course to Helen and AMMF for the above links.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: chemo has started

This discussion is fascinating to me and I have a question. I understand why a liver transplant is not an option when the CC has metastisized outside the liver, but why not do one for cancer that appears to be completely contained in the liver as in ICC with mets to liver?

Re: chemo has started

dmj4ctj wrote:

This discussion is fascinating to me and I have a question. I understand why a liver transplant is not an option when the CC has metastisized outside the liver, but why not do one for cancer that appears to be completely contained in the liver as in ICC with mets to liver?

From what I know, some places will consider a transplant if it is completely contained to the liver.When I first learned I have CC I had mets in the left and right lobes. Thankfully chemo has cleaned it all up, and now I might be getting a new liver any day!

~Tiffany~ 31 years young Fighting CC since 10-27-2011Wife to Brian; Mommy to Carter (8) and Madison (4)http://tiffanyschwantes.wordpress.com/Liver transplant 7-9-2013

Re: chemo has started

I am SO excited for you Tiffany!! I'm really glad they've expanded the criteria so that more people have a chance of beating this disease. BTW, whatever happened to the option of a living donor transplant? Dianne

Re: chemo has started

Additional informationAppears that physicians within certain institutions set their own criteria by loosely following the criteria for Hepatocellular cancer transplants.It is a team effort including transplant surgeons. Patients are evaluated on a case by case basis. Criteria include positive response to therapy and non-rapid disease progression. So, it appears that each case is different and each patient is decided on individually. Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: chemo has started

dmj4ctj wrote:

I am SO excited for you Tiffany!! I'm really glad they've expanded the criteria so that more people have a chance of beating this disease. BTW, whatever happened to the option of a living donor transplant? Dianne

Thank you!!! My surgon believes I would do better with a whole liver, and said living donor wasn't really for me.

~Tiffany~ 31 years young Fighting CC since 10-27-2011Wife to Brian; Mommy to Carter (8) and Madison (4)http://tiffanyschwantes.wordpress.com/Liver transplant 7-9-2013

Re: chemo has started

marions wrote:

Additional informationAppears that physicians within certain institutions set their own criteria by loosely following the criteria for Hepatocellular cancer transplants.It is a team effort including transplant surgeons. Patients are evaluated on a case by case basis. Criteria include positive response to therapy and non-rapid disease progression. So, it appears that each case is different and each patient is decided on individually. Hugs,Marion

I agree with this Marion! I was talking to Methodist, and they told me they had a woman with intrahepatic CC, and she had been turned down for transplant at 3 centers. She went there with no hope. The agreed to list her for an extended donor. 3 years later, she is still doing very well, and cancer free! They also do SO much testing there, I went through it all. If you don't pass a test, you don't get listed.

~Tiffany~ 31 years young Fighting CC since 10-27-2011Wife to Brian; Mommy to Carter (8) and Madison (4)http://tiffanyschwantes.wordpress.com/Liver transplant 7-9-2013

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